5-year-old Jackson named Honored Hero by the Crohn’s and Colitis Foundation for the “Take Steps” walk

Jackson, a 5 year old, from Lombard was named of the of the Honored Heroes by the Crohn’s and Colitis Foundation of America for the Chicago “Take Steps” walk to be held on Saturday, June 22, 2013. Jackson and his family, along with 1000 individuals and families will walk at Grant Park’s Avery Field to raise funds to help find a cure for these diseases that greatly affect the quality of their lives. The walk begins with registration at 4 pm and the opening ceremonies at 4:45 pm. Individuals who would like to participate can register at: www.cctakesteps.org/chicago

Jackson was diagnosed at age 3 with Crohn’s disease. “Jackson has had seven inpatient stays in the hospital in past 3 years, so approximately 50 days in the hospital,” said his mother, Beth Fuller. “Jackson’s symptoms have been stable enough for him to be weaned off steroids since December 2012. He was also able to be weaned from medications for stomach ulcers. His health has been stable enough for him to attend kindergarten this year with days missed for cough/cold, but not because of his Crohn’s.”

Nearly 1 in 200 Americans suffer from Inflammatory Bowel Disease (IBD). IBD encompasses ulcerative colitis and Crohn's disease, and can affect anyone. The toll is both physical and emotional, but people who are affected are reluctant to talk about it.

“Jackson is a typical five year old who likes Scooby Doo, reading, going to school, playing games on the iPhone, and chocolate shakes from Portillo’s, but he dislikes cleaning his room!,” said Beth. “Since Jackson’s symptoms began we have tried to make it as normal as possible to talk about what’s happening with his body. He is too young at this point to experience the embarrassment that we know is to come. The more people who come forward and talk about these diseases, the better off he will be as he gets older and deals with the pressures of fitting in.”

IBD are painful, medically incurable diseases that attack the digestive system. Symptoms may include abdominal pain, persistent diarrhea, bleeding, fever, severe fatigue and weight loss. Many patients require numerous hospitalizations and surgery. The fastest growing patient population is children under the age of 18.

Jackson and his family will help raise awareness about IBD by sharing his story at the “Take Steps” walk in Grant Park. “As parents we worry all of the time about how Jackson’s disease will affect his life. Knowing that there are people who can help provide guidance in dealing with symptoms, support in difficult times, and resources for improved medical care is critical,” said Beth. “ Also, knowing that CCFA is funding research to help find better treatments and a cure gives an underlying hope for Jackson’s future.”

The Crohn’s & Colitis Foundation of America has helped the Fuller family make connections with other children with these diseases and their parents. “By taking part in the Take Steps walk, we have felt like we are able to do something for Jackson’s disease when so many times we feel helpless to make him better,” said Beth. “It has given our extended family the opportunity to feel like they are helping as well. Participating in the walk and seeing others with similar diagnoses has shown us that we are not alone and has allowed us to put Jackson’s disease in perspective.”